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Autoimmune Progesterone Dermatitis
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Autoimmune Progesterone Dermatitis

Does anyone have any information about Autoimmune Progesterone Dermatitits?  I was diagnosed with this years ago and was put on Prednisone for a period of time.  I have not had very many reoccurances but am worried about what pregnancy will do to the progesterone in my system.  Any answers?
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I don't know anything about it, but a maternal fetal medicine specialist probably would. If you are not already pregnant, you can get a pre-pregnancy consultation to discuss the risks.
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I have this disorder and was pregnant twice with it.  If you'd like, you may email me at ***@**** and I'll tell you my experience with it.  It's extremely rare.
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Avatar_n_tn
I have this disorder and have been living with it for 11 years, but was only diagnosed about 6 years ago. Its horrible but God is good. My last pregnancy was difficult but all is well.
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Avatar_n_tn
All is well with my daughter. But I have been on steroids for 11 years and I am 36 and am trying to figure out how to get off the steroids, because they make my whole body ache and I feel like I need to have by bones checked. Right now my dermatologist and my OB are batteling this out trying to see whats best for me. My OB just doesnt want to give my an hysterectomy.
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i have the same problem try lowering the dose?
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515793_tn?1212470046
Hi Metta and Ladies, I have also been diagnosed with Autoimmune Progesterone Dermatitis after 5 years of itching, several wrong diagnoses, and 3 dermatologists later!  I developed the disorder while pregnant with my first born.  I thought I had gotten into some poison oak but it lasted through my whole pregnancy and never went away.  I knew I was pregnant with my second because the hives came back full force over 90% of my body!  The hives were bearable for me durring pregnancy because of the little miracle that was taking place in my body!  The hives after pregnancy are hard to deal with now and make me very irritable.  I am also working with my OB and dermatologist to find some resolution.  Right now  I am taking Microgestin continuosly trying to avoid my menstral cycle.  It worked great for about 3 months but came back full force this month.  My hives normally last around a week, but this month it is going on 4 weeks.

Today I got a call from my very concerned OB trying to figure out what went wrong!  I brought up hysterectomy and she said NO WAY!  I am almost 34 and she is also in her 30's and said I am too young to do it without having issues later estrogen therapy that goes along with the hysterectomy.  Heart disease runs in my family and some of estrogen therapies lead to cancer!  

If your OB is pushing a hysterectomy, I think you need a second oppinion!  As for the steriod treatment, it does not work at all for me.  Nothing does.  I find if I take cool showers and wash with Noxema it calms the itching and I use the cooling lotion from Eucerin.  If you want I will keep you posted on my dealings with this disorder!
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Avatar_n_tn
I am in desparate need of finding a dr. that can do an antibody test for progesterone I have read that the intradermal progesterone test can get into your glands and do more damage? My primary is most certain as am I that I have autoimmune progesterone dermatitis .We cannot find any dr. that has even heard of it as I know it is rare. I have suffered with this for over 30 years. It started when i went on birth control pills years ago. I have been off them for years and the rash has not stopped The dr. give me prednisone which I do not want to take. I have been to dermatologists from boston to nc. where I now live This is so frustsrating trying to get answers. I will appeciate any advice any of you can give me on testing .I live near myrtle beach sc.This rash covers my face ,neck arms .
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Avatar_m_tn
I am 25 yrs old and my younger sister is 21...we both have this disease. We have gone to several dermatologists, immunologists, and now are trying endocronologists. I was put on this specific birth control pill...TRIVORA...10 yrs ago and have not seen the stupid hives since. My sister is also on this birthcontol and has had the same results. She recently stop talking the pill this month and got the stupid hives again!!!! TRIVORA has really helped us out! The only concern is pregnancy :( We both want to have children but are terrified the hives will come back stronger than ever during the 9 month period! The doctor recently gave my sister methylprednisolone, type of steroids, to help with the hives and has some effect...you might want to try and get on a mild steroid while trying to get pregnant. I'm not sure, you would have to discuss that with the OB doctor.
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Avatar_f_tn
My gyneco put me on Tamoxifen to control my APD and it works out fine.  As soon as I see the symptoms appear, I start the Tamoxifen and the symptoms disappear right away.  After 5 or 6 days, I stop and if the symptoms reappear, I take Tamoxifen for a few more days.  Otherwise, I don't take the medication before the next ovulation. The dose I am taking is so low that I don't feel any side effects.  The lowest dose is 20 mg but my doctor told me to cut the pill in 4 so I am only taking 5 mg per day.

Tamoxifen is an estrogen blocker and is not a steroïd.  Don't ask me why it solved the progesterone problem if it blocks only the estrogen but it works.

Maybe you should ask you doctor to try it.
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Avatar_f_tn
How do I present this to Dr.?  After my first pregnancy 7 yrs ago I have experienced everything from hives to horrible rash on back and hands...but my main concern is the fever blisters on my lips.  Anyone else get this? They started with my cycle but are now constant I also have monthly face rash similar to Lupus rash but bumpy.  I am so relieved to finally tie all this together but how to I bring this up to my gyno?  Also did anyone get better during pregnancy and then have episodes after birth?
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515793_tn?1212470046
My APD started during my first pregnancy and seemed to be worse during the first 3 months of pregnance.  I still suffer from it and have not found a solution as of yet.  I am still on microgestrin but it does not take it completely away, just makes it a little bit more controlled.

I did discover that predisone works to relieve it however when coming down from it the hives intesify.  That's what happened to me 2 years ago.  I just read the message from 4star about TRIVORA and I am serriously thinking about trying it.  I have been dealing with these hives for about 7 years as well!

I would be point blank with your gyno and let then know of the options you have read on here and discuss what your best option is!  Keep me posted on what your final outcome is.
Thanks~
Stephiegoil
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Avatar_f_tn
Years ago, I started having hives and we could not pin it down to an allergy.  I have had breakouts of hives for over 11 years now and still do not know but now suspect APD.  However, I tried 3 of my specialists and like you, no one has heard of it.  If anyone in the Dallas TX area had luck finding a doctor, please let me know.  
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Avatar_m_tn
I have this also. I am in KY and can't find a doctor. If anyone knows of one, please let me know. The doctors here don't even know how to test it. I've called my gynecologist, allergist, edocrinologist, and now dermatologist.
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Avatar_f_tn
Dr. Frances-Web Smith in Maumee, Ohio treats autimmune progesterone dermatitis. Maybe your gyn can contact her for the treatment, she can be found on the internet.
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Avatar_m_tn
Hello I have APD for about 2 years now. Dont think ive always had it, think i developed it once i got off birthcontrol pills that i was on for almost 10 years straight. Ive been trying to get pregnant within those two years since I got married. I'm actually pregnant right now, naturally, 8 weeks. Last 2 days developed horrible itchy hives all over. My 1st OBGYN appt is this Tuesday coming up and it's Thursday today. I'm scared as hell and don't know what to do. Ive been waiting for this for so long I am desperate not to lose it. Don't know if I can take prednisone or benadryl and i havent bothered calling my OBGYN because she is clueless about APD and didn't even believe I had it when I told her a year ago. Im laying down constantly but don't know what will help or make it worse, I just keep praying. This is far worse than any morning sickness. If anyone has any advice or wants to chat my email is ***@****
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Avatar_m_tn
Hi, I'm pregnant now, only 8 weeks, with APD and had a sever flare up a few days ago. It's disappeared now, not sure why, but I'm sure it will be back if I'm still in fact pregnant! Can you tell me how you dealt with it? Your email is blanked out so I couldn't email you. Hopefully they won't blank mine out, please reach me here if you'd like at staceou @  yahoo  .  com
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